This debate pulls me in two directions. I know that the Medical Innovation Bill, which proposes that,
It is not negligent for a doctor to depart from the existing range of accepted medical treatments for a condition […] if the decision to do so is taken responsibly.
makes little sense in terms of encouraging medical innovation. It seems unlikely that useful discoveries will arise from individual patient experiences with new treatments outside properly conducted clinical trials. This is not to say that individual lives will not be improved or extended by treatments that doctors liberated by the bill are able to propose. An untested but logically promising approach to treatment might work, and without access to that treatment a patient’s chance of longer life* falls from x% (however small) to zero. But, should they benefit, their experience and ‘outcome’ will count for nothing in the larger world of evidence based medicine.
Allowing patients who might be entered into clinical trials to be beguiled by alternative and generally unsupported treatments will reduce the evidence base, and delay access to proven treatment for future generations. But what if the patient’s condition is not the subject of a clinical trial? Should the patient be denied an unconventional treatment just because his or her doctor finds themselves in an indefensible position? A common retort is, ‘How can you give a dying person a treatment that is not proven to work, but which may harm them?’ As quoted on the Stop the Saatchi Bill website, “There are many patients that we can’t cure, but no patients we can’t hurt.”
Lord Saatchi’s introductory speech in the Lords was emotional, describing the common indignity of the dying and the powerlessness that is brings.
‘…those condemned by cancer suffer a worse fate than the worst mass murderer. While they await execution, they are tortured. For them, hair loss is the good news. Less good news is that their treatment regime—the drugs and the cycles of their administration, and the surgical procedures—are often 40 years old. They create the same symptoms as the disease: nausea, diarrhoea, vomiting and fatigue. A beautiful woman’s legs turn into elephant’s legs; her arms begin to make a heroin addict’s arms look attractive…’’
How could a person in this situation not be offered an alternative? The emotional heart of the speech draws us into a perhaps under-regarded side of the argument – patient autonomy. To put it starkly, ‘Why shouldn’t a dying patient try treatment X?’ If the patient wants it, why deny them the access? If there is a risk of harm them – so what, as long as they give informed consent. It’s up to them. It’s their body.
The counter to this argument is that dying patients do not give fully informed consent. They are vulnerable. Their proximity to death has made them victims to false promises and unjustified hope. Stop the Saatchi Bill dwells on this –
Patients and those making decisions on their behalf will almost always want to try anything at all. This bill expressly permits harm and exploitation of this vulnerability and does nothing to promote shared decision making or patient empowerment.
Sir Robert Francis QC says “It increases the risk to vulnerable patients of mavericks with irrational or unjustifiable grounds for proposing a treatment and those with commercial interests in promoting dubious treatments.”
The Motor Neurone Disease Association says “There is a clear danger that the Bill could lead to the exploitation of vulnerable people.”
Are these arguments overly paternalistic? Most terminally ill patients have retained their critical faculties, and are not likely to be hoodwinked. Although dying, they are not bedbound or semi-alert, nodding weakly to whispered suggestions from the ‘quack’.
I wonder what I would want. It is a difficult and potentially insensitive exercise, imagining what it would be like to be terminally ill. I see myself sitting in the oncology clinic, hearing that my recent scan shows that I have progressed on chemotherapy and that there is no more to be done. I pull a newspaper cutting from my pocket, and ask about a new, unproven, scientifically dubious therapy. My doctor shakes her head and says,
“Ah yes, I’ve have heard of that. There’s very little evidence to support it. And the experts disagree that even the theory is right.”
“But do you do it here?”
“No. It’s not licensed, it hasn’t been funded…”
“But I’d really like to try it.”
“I’m sorry, the NHS just doesn’t do it.”
“Can you refer me to a clinic that does though?”
“I’m really sorry, I can’t. If there were side effects…”
And she is worried now, worried about her reputation, the accusations of being a maverick. I don’t understand why she can’t refer me – it’s my choice, and if it kills me faster then so be it. I’ll sign anything. I want to try it. Hope is what I need, and in this treatment I see hope, even if others more knowledgeable than me, see ‘snake oil’.
Stop the Saatchi Bill says the bill has been promoted as a way to,
“empower patients to demand that every possible route should be tried to prolong their life and improve its quality.” However, the power to choose or reject new treatments remains with the doctor. While the patient can suggest a treatment, the doctor can still reject it. The bill does not give patients the power to make the doctor consider any new treatment at all.”
This is true. Just because a patient wants something doesn’t mean the patient gets it. This applies to cardiopulmonary resuscitation, for instance. It’s the doctor’s choice at the end of the day. For all my instinctive warmth towards a Bill that appears to enhance patient autonomy, the truth is that towards the end of life, or in circumstances of grave illness, we operate in a fairly paternalistic system.
So am I for or against? The part of me that regrets a terminally ill patient’s inexorable loss of autonomy would reject the arguments listed in Stop the Saatchi Bill… but I would not seek to change the current status quo. Lord Saatchi was I think wrong to say,
‘All cancer deaths are wasted lives. Scientific knowledge does not advance by one centimetre as a result of all these deaths, because the current law requires that the deceased receive only a standard procedure—the endless repetition of a failed experiment.’
My perception, sitting regularly in liver and pancreas cancer multi-disciplinary team meetings as I do, is that many die within clinical trials which are by definition attempts to break the ‘endless repetition’ of treatment. Innovation is alive and well, albeit progressing at a slower pace than those who have contracted serious disease would like. The pace is slow because the method is deliberate. And the method is deliberate because safety in paramount. Frustratingly, it is future generations who will benefit from the suffering of the present.
* The Bill is directed at doctors who look after the terminally ill, but does not mention terminal illness in its text.